Saturday, 30 April 2016

On ‘Giving Up’

I struggled for a
Blogging Against Disablism Day topic this year, which isn’t the good thing it
might seem. It means that many of the aggressions we face have become so
normalised we tend to overlook them. But then a friend posted something, an incident
of wheelchair-related inspiration porn that had hit close to home, and I had my
topic.

Checking back, it
looks like I didn’t do one of these last year*. It’s always a slightly awkward weekend
for me, but last year I was also 3 or 4 days post-surgery (not disability
related), so maybe I can be excused. So that makes this the first BADD essay I’ve
written since opting to become a wheelchair user.

Yes, opting. I could
probably still be wobbling about on crutches if I wanted to. And boy does that
confuse society. Society has this whole set of value judgements built around
wheelchair use. It’s ‘giving up’, they would ‘rather be dead than in a
wheelchair’, they are endlessly fascinated by ‘so, can you still have sex?’, and
so on. But I hired a wheelchair for Worldcon back in summer 2014, and I had more
energy left at the end of five days in the chair than I would have had after
one day on crutches. With the chair I managed five days, without it I might not
even have managed that first day. That was a very persuasive argument. The idea that this represents 'giving up' is
strange. I was artificially limiting my life because I was worried about how
society, and my family, would react to me choosing to ‘give up’. As it turns
out, my family were fine with it, and close friends have been universally
supportive. I’m kicking myself for not doing it years ago.

But I meant to talk
about society and not me. I’ve had a not particularly good chair for a year, I’m
getting a much better one in a couple of months. It’s taken a fight to get
that, the OT’s and technicians of Wheelchair Services are pretty good, but you
have to fight your way past their gatekeepers and I might still be trying if I
wasn’t so articulate, and even with that and the aid of friends who know what
to say to manipulate the system it’s going to be nearly two years from starting
the process to getting the chair I need.

So you get your bright
shiny new wheelchair, which in most cases is a heavy, steel-framed monster that
isn’t very good at what it does and transmits every bump and lump in the
pavement straight into your backside because it’s a non-rigid frame and that’s what
we fob people off with at first, and you head off into society. And you find yourself
suddenly invisible. Literally invisible, people don’t see you, they’re looking
two feet above your head. Which is weird, it’s not as if society isn’t filled
with children who don’t come up to our waists, but try and navigate a crowded
street at chair height and you’ll be hoarse from yelling ‘excuse me!’ and ‘watch
out!’ to stop people from standing in your path or trying to walk through you.

And then you get to
your destination, and there are steps. On crutches I could get to most places
in Rochester. On wheels I’m barred at the door by every other shop, bar and
restaurant. I can only get into our regular Saturday coffee place by climbing
out of the chair, folding it, and hauling it up three steps. Even newly opened
premises have major access problems. Costa Coffee, the biggest chain in the UK,
opened a new coffee shop in Rochester last year. They gutted the building, taking out a
quarter of the ground floor to put in a staircase down to the basement. They
left the step at the entrance. Just to completely take the piss there’s a sign
on the door saying if you need help just grab any member of staff – but to do
that I’d have to be inside, and getting inside is the help I need!

It would be very
interesting to grill a council planner on how they let that slip past, refurbishment
of that scope brings the building within modern access regs, but that’s not the
first thing I’d like to do with a council planner. Rochester is a tourist
destination, I understand that, it lives on its Dickensian ethos, but that
doesn’t mean you have to put cobbles every-damned-where, and especially not
full width across pavement and road so they’re unavoidable! I’d really like to
put the planners and the politicians on the Planning Committee in a chair and have
them roll up and down the High Street a few times. I guarantee you they would
be a whole lot less enthusiastic about cobbles and heritage paving afterwards
(and a whole lot more hesitant about sitting down for the next few days).

Travel with the chair
is similarly interesting. I took it to Greece last summer, and found that in
neither of my booked hotels could I get it into the lift to get it up to the ‘accessible’
room I had booked. Not without getting out and folding it anyway. The ‘accessible’
bathroom with the towel rack above my standing head height in the first of
those was an interesting design feature, though the second was excellent. Just
a pity I couldn’t get to half of either room because of unthinking layout. Air
travel was trouble free in my case, but I know many people still run into difficulties.
My problem has been with trains. I’m fortunate that the local station works on
a turn-up and go basis, the platform staff will happily get the ramp and put me
aboard; it’s when I’ve actually had assistance booked that it has the chance to
fall apart. I’ve had problems on fully 50% of my journeys – assistance not turning
up, turning up at the wrong station, not being passed on from one Train
Operating Company to the next and so on. And for this I’m expected to give 24
hours notice?

I had an interesting
encounter on the train last summer, mostly being in the wheelchair space means
no one is sitting opposite you, the seats fold to create room for the chair,
but there is just room for someone to sit in the aisle seat if they don’t mind
sticking their feet slightly sideways. On a crowded service I invited someone
standing to take advantage of that, and we were having an interesting
conversation until he looked at the chair and said “I presume from the
wheelchair you don’t work.”

That’s such a
fascinating presumption. As it happens I don’t work due to disability, but that’s
completely independent of the chair. Yet the presumption is chair=incapable of
working, and I know he’s far from alone in that presumption. I don’t understand
that. I worked with my mind – software engineer, using a chair doesn’t stop my
mind from working. It was attitudes to disability that actually stopped me from
working, and the attitude that if I’m using a chair then clearly I can’t be
capable of working is just a variation on that.

Attitudes to working while
disabled are one of my campaigning focuses. The government’s Disability
Confident scheme, when it isn’t claiming workplace disability discrimination
doesn’t exist, is heavily focussed on inspiration porn (using disability to
make non-disabled people feel good about themselves). Employers are instructed
to “See the Ability, not the Disability” and Paralympians are rolled out to
tell them, well actually they’re just rolled out, to ‘inspire’ them. And the
employers are soooo inspired. But actually none of this is doing anything to
normalise the perception of disabled workers as just another kind of normal; and
if you don’t ‘see’ my disability, how can I be confident you will make the
appropriate allowances?

And ultimately that
sums up all the issues I’ve rambled through. Society doesn’t see wheelchair use
as normal, it sees it as exceptional, and not in a good way. For disabled
people, wheelchairs are liberating, a route back to active participation in
society. But when society looks at wheelchairs it sees them as representing the
other, as pitiful, as exclusionary. To quote an SF/F author who responded to me
talking about disability identity and the failure of society to listen to
disabled people: “Disability isn’t an identity, it’s a predicament.”

Disability isn’t a predicament,
it’s who I am. Wheelchair use isn’t a predicament, it’s my legs, it lets me do
far more than I can do with the set of legs I was born with. Opting to use
wheels wasn’t ‘giving up’, it was the antithesis of giving up: ‘I can do more
this way’.

Maybe when society
talks about ‘giving up’, it’s really talking about itself. About its failure to
remove barriers, its failure to see disability as normal and not ‘the other.’

Maybe it should do something
about that.

* ETA: Actually I did blog, I just didn't put it where I normally do. Because we were deep in the UK's electoral campaign at the time I posted it at Where's The Benefit.

4 comments:

I love this piece! Esp 'For disabled people, wheelchairs are liberating, a route back to active participation in society. But when society looks at wheelchairs it sees them as representing the other, as pitiful, as exclusionary.'

My own contribution to BADD 2016 describes how I was excluded from paid work. ('This wheelchair user has a voice.')

Do you know Euan's Guide? https://www.euansguide.com/ It's quite new. I like it.

Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing. Wheelchair Price